Newly diagnosed and looking for info

Hi there,

I have recently been diagnosed with Endometriosis (so new I still have to keep checking the spelling, ha ha).

To try and cut a long story short, I recently went to hospital to have a large dermoid cyst removed from my Ovary. When they did the surgery they cut me open and where surprised to find that I had what they referred to as 'severe' Endometriosis which had fused all my organs together in there, including my bowel being stuck onto the back of my womb.

I'm lucky they where really nice doctors and tried to explain everything in simple ways to me, while I sat taking notes as it was all a bit much to take in, I was afterall expecting to have the cyst removed and go on my merry way better and pain free, not be told I had something else to deal with :\

The consultant seemed rather shocked it had got so severe and it had never been picked up on and asked if I had ever been to the doctors with heavy periods and pain, which I have on several occasions but have always just been told 'some women have heavy periods' and had my pill swapped and changed around.

They said they probably won't be able to offer me any surgery for it as it would be too much of a risk on my bowel and other organs as they said it was hard to tell where one thing ended and another started it was that fused together.

They wanted to make sure I was healed from this op and they had time to do tests on the cyst they removed and write up there reports so my appointment to go back isn't until mid May, but being new to all this I wondered what people would recommend I need to be asking at my appointment? I want to make sure I get as much info as I can to help me deal with it and thought people who have been diagnosed longer might be more clued up on things that people often forget to ask...

Sorry, that was meant to be a long story cut short, ha ha, thank you if you read all of that, and also thanks in advance if you have any advise for me :)

11 Replies

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  • Hi love thought I'd leave a comment although I might not being any help to you! I think doctors pan to many girls off with this its just a bad period makarky that's why it takes girls so long to eventually get a diagnosis, I was lucky and it was only 3/4 years! Main questions I asked was regarding treatment and fertility as I'm on 23 that's what's always been most important to me whether it would effect me having a baby, so I recently had surgery in November tovremove mine and it had unfortunately spread pretty bad but doctors managed to remove a lot of it then put me on zoladex injections for 3 months, and as soon as my period comes back I'll be trying for a baby as that's the best time for me to hopefully conceive. You seem to of had your work cut out before your endo so good luck to you and I hope you get treatment and on the right tracks when you get back to see your doctor xxx

  • Hi! Thank you for replying Veusx5. I think you are certainly right about being fobbed off by doctors sometimes with the 'it's just bad periods' view. It's so very frustrating. Although I'm not over the moon to have been diagnosed with something, I am happy that there is eventually an explanation to how I have felt all this time, and at least I can get some proper answers now...hope that makes sense.

    I didn't ask too much about fertility at the hospital so yes I shall pop that on my list, ta. I've not had children and am now 31, I've never been in the position where a relationship has led to trying for a baby and I always thought that if I did met someone I still had time for that left, I guess now my age and this is probably going to go against me in that area. I don't suppose they will be able to give me any answers really until I am in a position where I am trying for a baby in future, but yes I should deffo ask about how it could effect that.

    Wishing you lots of luck in trying for a baby :) I hope everything works out for you and many thanks for taking the time to reply to me :) x

  • Hi, I'm sorry to hear of your experience.

    For reference it is best to be treated by an endo specialist and not a general gynaecologist. You can ask your GP to refer you to any specialist accredited endo centre in the country. Your GP may not of even if heard of these centres - mine hadn't and neither had I until recently!

    A list of the accredited centres can be found on the web: bsge.org.uk.

    Some on the list are private only so unless you have either private health insurance or the money to pay make sure it is a NHS one!

    Unfortunately many general gynaecology surgeons lack the required skill to excise (ie cut out) endo. Excision surgery is now considered the gold standard for removing endo so please avoid anyone who wants to laser or burn away the endo. Although it's worth baring in mind that some may use a laser as a cutting instrument which is ok.

    Endo centres have dedicated teams consisting of specialist endo surgeons, bowel surgeons, endo nurses and pain management consultants to help provide a holistic treatment approach to endo.

    I wish you all the best.

  • Thank you for your advise! I've just had a look at the link you sent and found there is a centre on there that is literally a 30 minute walk away from my house! It is a private centre so I'll have to look into the medical cover I get through work. Brilliant, thank you again, that has been really helpful :)

  • No worries and best of luck. Ps if might be useful for others in the future if you could educate your GP practice on these accredited centres. As I mentioned earlier my GP practice hadn't heard of them - they have now! Spread the word so women receive better and appropriate treatment quicker!

  • What area do you live in? I have been on here and other endo sites so have heard a lot of ppl recommend different surgeons from all over the country I maybe able to advise you on who to ask for. Xx

  • Hi Yazza, Thank you for the response, I'm in West Yorkshire. I've just seen from another link above that there is an Endometriosis centre not far from where I live in Elland, so that's reassuring to know if I don't get the answers/treatment I need from the hospital in Huddersfield. I'm beginning to see the first and most popular bit of advise is to make sure I'm seeing the right people, I'm really glad I posted as not knowing much about it I would have probably not even questioned who they where sending me too and just gone along with it :) Many Thanks again.

  • Just wanted to say I am currently under the care of the endo specialist in Elland, Mr T.

    I did a lot of research this time round having had endo for 20+ yrs and 5 surgeries and various hormone treatments and pain meds. My consultant does seem to come very highly recommended by many on here and other endo forums.

    I am due to have excision surgery (for the endo) with him in a couple of weeks & a hysterectomy because I also have adenomyosis. I even managed to speak to someone directly on the phone who had surgery with him 2 yrs ago. She was apparently an "absolute mess inside" and underwent 9.5hrs surgery with him and says she hasn't looked back since. She called him her "God send"!

    The only thing you might want to be mindful of is that although I am fortunate enough to have private health care insurance through BUPA they will not cover all of his fees. There is a shortfall you are likely to have to pay direct.

    He will insist on doing a diagnostic laparscopy even with previous diagnosis as he wants to see for himself the extent of the, for want of a better word, work he might have to do. The shortfall for this is £1000 if he doesn't need to do any immediate work or £3000 if once he looks inside he doesn't feel treatment can wait, eg if you have a large endometrioma (aka chocolate) cyst or cysts that could cause more damage id they rupture. The largest cyst on my ovaries was 3cm so he has left them to remove in a couple of weeks time.

    If he feels you would benefit from surgery after this the shortfall for this could be anything from £5000 upwards. It's a lot of money and I am actually taking out a loan for it but if it's as successful as others have claimed it to be it will be worth it.

    If you type in TPE or total peritoneal excision into the search bar you will see the recommendations I saw.

    Best wishes

  • Hi

    Please have a look at some posts I have put on about endometriosis that might help (just click on my icon). And feel free to ask anything. x

  • Thank you Lindle, just had a browse of your posts, they have been really informative, thank you for sharing :)

  • You best form of attack is to arm yourself with the facts to take to your gp my advise is to go to your gp and ask for a referal to this centre they might try and fob you off but they can't refuse it is your legal right to see whatever consultant you choose on the nhs.. You may have to wait a bit longer than if you were private but it would still be the same team as you would get privatly. Xx

    Good luck. X

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